Monday, December 3, 2012

There is a statistic floating around that says one in five US households has a child with some sort of special need- be it a mild learning disability, a physical disability, or something more severe like Angelman Syndrome. If you know me or have read my blog for any length of time, you know that Cole and I have a daughter with Angelman Syndrome- a rare and, in her case, random neurogenetic disorder.

I was once told, very early in Ava's diagnosis, that the worst thing that ever happens to your child is the worst thing that happens to you as a parent. I have to remember that often. I will read about parents struggling with something comparatively minor to AS, and think to myself "man, I wish we had THOSE problems!" And I know there are parents out there who feel the same about me! Because the truth is, as profound a disability as Angelman Syndrome is, Ava is doing remarkably well! She is walking before her 3rd birthday, when many with AS never walk. She has sat up and fed herself since before her 1st birthday, which is something some with AS never do. She is making huge strides that some twice her age aren't making...we are really very blessed!

Still, as much as I know we are blessed with Ava's progress and abilities, I still have moments- just about every day- when I see her struggle with something and a sorrow and pain creeps into my heart. And I find myself thinking "why her?" Awww, the "why's." I think every special needs parent, regardless of their child's diagnosis or challenges, have these moments. For me, I find myself thinking "why her? I did everything I was supposed to do as a mom!" and "why her? This was not supposed to be how things happened!" Because you want someone, or something, to blame for what is wrong with your child. When, the reality is, it was God's will. That, for me, was- and is- one of the hardest things to accept. Knowing that the LORD could cure Ava if it were His will, but so far anyway, it isn't. His will is for her to have Angelman Syndrome.

A fellow Angelman Syndrome mom posted something recently that was an amazing reminder to me and just blessed my heart, and I wanted to pass it along. She shared from John 9...

As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?" "Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life."Powerful, right?! "but this happened so that the work of God might be displayed in his life." Ava has AS so that the work of the Lord can be displayed in her life as well. I fully and 100% believe that. Being a special needs parent isn't easy. Far from it. There are days where you want to give up. Run away. Be someone else. But where the challenges are multiplied, so are the rewards! And sometimes the world thinks that we, as parents, have done something wrong to be "punished" with a special needs child. Oh, how ignorant a thought. Having a child with special needs is a blessing no one can understand unless you experience it! Perhaps an unwanted blessing at first, and one that comes with great and unique challenges. But it forces you to be your best, to dig deeper for courage and strength and patience, to turn to the Lord when you feel you can't go on...it forces you to be a better person, parent, and Christian. And that is a blessing!

1 comments:

This was such a great post..and I needed it so much!! Thank you..love, love that verse. I was just thinking tonight "why my Bella?", and having a "moment". Thanks so much for sharing! I'm guessing you had your baby by now?!...congrats!! :) I think about you often (but I'm so behind on reading blogs)..hope everything is going well!